Because I see proper diagnosis as the biggest challenge facing lipedema patients, I have implemented a program to track how patients find lipedema specialists.
Another challenge with lipedema is the lack of standardization. There are no standards for the diagnosis or treatment of lipedema. There is a lipedema staging system but how does the stage of lipedema correlate with the choice of treatment. I have my own algorithm for treating each stage of lipedema, but there is still no standard for treatment. Likewise, lipedema fat is different from normal fat. It looks and feels different. Lipedema fat is more fibrous and embedded with fluid, giving it a more pale appearance. As compared to normal fat, I can remove a great deal of lipedema fat (7+ Iiters) without any risk to the patient. The national standard for outpatient liposuction is to remove 5 liters, and no more than 7 liters at one time. But through my extensive experience with Lipedema patients I frequently remove over 7 liters of lipoaspirate from the calves and knees (as an example) without any risk of harm to the patient.
It would be worthwhile to study the effects on higher volume liposuction for lipedema, looking at postoperative blood panels and vital signs. The concern, however, is that there’s a massive difference in removing 7 liters and removing 15 liters. As the standard acceptable lipoaspirate volume creeps upward, the tendency is to push further beyond these numbers.